G-Tube Chronicles: Looking back, one year later

One year ago last week Sebastian had his g-tube surgery. Everyone told us we would be so glad we did it. I didn’t believe them. But they were right.

Day 1 after surgery.

Day 1 recovery.

The hardest past was not the surgery. Even though any time your child goes under general anesthetic, it’s frightening. And yes, waiting for the surgery to be finished and to be reunited definitely causes anxiety. I can’t write too much about the recovery in the hospital [four days] as Ali was the one sleeping over since Tallula was still a baby and nursing full time. Seeing Sebastian with a nasal gastric tube was unpleasant. He had one as a newborn and it caused him much discomfort and reflux. It was short term. Learning how to change his dressing and rotate the tube became second nature. They said that too. Not eating solid food for a few days was tough but he picked up where he left off when he came home.

Hanging with his baby sister.

First day out of the hospital room.

Home and happy to be eating.

The hardest part was after that. Recovering at home. It wasn’t difficult keeping his site clean or free of granulation tissue. I was certainly over protective; keeping his tube in place so no one pulled it out accidentally or otherwise. The hardest part was the discomfort Sebastian felt every time he had to eat and have his neocate formula through his tube. There was a lot of reflux and a lot of whining. A lot of exhaustion and inability to nap for discomfort. I really thought it would last forever. It lasted a few months.

Without naps came exhaustion which meant seizures. Once the weather got nice enough (a few months later !) I took the kids for walks to nap. There was still reflux and occasionally a seizure but a lot more rest happening for both kiddos which meant sanity for me.

When we left the hospital the nutritionist (who encouraged me not to mix expressed breast milk – I had pumped – with Seb’s neocate because it wasn’t really helping his immune system or to gain weight with healthy fats and vitamins AND it was possibly taking nutrition away from Tallula ?! She didn’t have children of her own…) [she] said Sebastian needed 400ml of the formula a day when he wasn’t also able to eat. And to try to get close to that regardless. Sebastian loves to eat. We also learned that if he didn’t eat while he was getting fed via tube then his discomfort and reflux was worse. It took a long time to figure out how much his tummy could eat while getting formula pumped via tube over the course of an hour. We settled on eating for 20-30mins. It was less than he ate before but he was getting the additional calories and liquid via tube. He’s gets a bit over 300ml neocate mixed with coconut milk a day with 3 meals and 3 snacks. He gets about 250ml via tube and drinks the rest. Once we got to this point of knowing what worked for him, life was better. We could go out for meals and hook him up knowing how long he needed to be in his chair (30-40mins) after his meal was done so he didn’t reflux. We got fast with hooking him up and very discrete. And we act like it’s nothing because it’s not anymore.

So things were going great. We could travel without worrying whether he would get dehydrated, over-tired, or worse – lose weight. Sebastian was gaining weight bit by bit. But mostly he was growing. He was getting taller. His feet were getting bigger. He was healthy and happy. He had more energy and even stopped taking naps because he just kind of grew out of them as kids his age do. We knew it was the right decision.

Then Sebastian started school full time. I’m going to sum up as short as I can how that went because it definitely had hiccups. And I haven’t found the time for a G-tube Chronicles; School (yet). The first term was difficult. There was definitely positive support and communication between the staff and myself; I had no doubt Sebastian was well taken care of. When your child depends on others for feeding this is a big issue. You need to know he is safe. I felt that he was 100%. What I worried about – and I always find something to worry about – was whether he was getting enough to eat and whether he was out of his wheelchair enough throughout the day. I also needed consistency with who was feeding him and who was administering his g-tube feed. Due to reflux he has to be in his chair 30-40 mins after a tube feed and staff like to err on the side of caution. I would pick him up some days and be told he spent most of the day in his chair. He was coming home hungry every day which made afternoons less celebratory in our after school reunion. His behaviour was much akin to the early days after the surgery. There were also several changes in staff duties which meant no one person was getting into the routine he needed to have a calm, full belly. It took a lot of phone calls and written communication but we’ve finally come up with what seems to be a good working system.

Since his return after the holidays I have a very happy and tired kiddo. He has an afternoon bolus with his snack so that he’s not too hungry when he comes home (lunch is at 11.30am!). I also met with his nutritionist and feeding therapist and got it in writing that he doesn’t need to spend the 30-40mins in his chair after a snack, only his lunchtime meal. This has made a huge difference in his opportunities for mobility. He’s been walking in his walker loads which is great news for everyone. The team records what he eats throughout the day and whether he has reflux or not in a simple check list that comes homes daily so I know since he can’t tell me. And even if he could, what kiddo tells his mom what he’s eating and when during the day. He’s too busy having fun learning!

Sebastian still has reflux. We all do our best to avoid it, but it happens. Sometimes it’s because he ate too much. Sometimes because he got too excited after he ate. Sometimes it’s because of something he ate. We minimize his reflux as best we can and a lot of that has to do with measuring amounts and feeding him a very specific diet. I’ve heard that blended diets help reduce reflux. I’ve done some research on them but I’m not sure how to manage it with Sebastian also eating regular [partially pureed] food simultaneously. He loves to eat. So for now the Neonate Jr [mixed with coconut milk for even more calories] goes through the tube while he eats. And I add coconut oil to everything. Because even though he has a g-tube he hasn’t magically gained loads of weight. But his weight is steady. And he’s growing. I can’t believe he will be 6 in just a few months time!

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3 thoughts on “G-Tube Chronicles: Looking back, one year later”

Hello, I’ve been following your blog since my little boys was born woth CP and love to see how well Seb is doing. There is a great group on facebook called ‘blended diet uk’ (although it’s a very international group) its great for advice on blended diet and also you may have come across it there’s a good book written by a man who was tube fed. My little guy has put on 2kg since going on blended food, he doesn’t eat orally anymore but hoping to reintroduce this soon. Hope Sebastian continues to do so well.http://www.amazon.co.uk/gp/aw/d/1470190222/ref=mp_s_a_1_5?qid=1390492003&sr=8-5&pi=AC_SX110_SY165

I LOVE reading your blog because of all the fabulous pictures of Seb- he has one of those smiles that just magically makes you smile back. And everyone needs more smiling in their days. It’s easy to tell he and Tallula are happy kids. Good luck getting the G tube figured all the way out! I imagine it won’t be too many more years before Seb is communicating clearly enough to share if he’s hungry, too, no matter who his audience is.